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Nice to meet you! Wow its just alot to take in. We live in San Diego Ca, I am from Ohio and my husband Pat is from up state NY, we are both in the navy.
Cole is 7 mos old, social, happy, but has queit a temper! He isnt sitting on his own but can bear weight on his legs will stand while holding on to stuff.
Cole was watched closly in the womb because of weigh issues, plus i had hyper emies(alot of throwing up) gained no weight. When Cole was born he had breathing issues and was put in the NICU for a week, he also had feeding issues.
At three months Cole got an infection we went in to the hopital that when they noticed his upper body tone was low and his ears we set funny ( couldnt tell). up to this point he was meeting his milestones, rolling laughing, just the feeding and the weight was holding us back. While in the hospital for a cuple week with phnemonia, the kept saying he might have a sndrome, I blew it off. See I have a severly handicapped sister who is now 21 with CP and I raised her until I joined the Navy, and it was sooo hard, so I was in a bit of denial!
Finally at a well baby check up a month ago the doctor mentioned he put a consult in for us to see a genetics doctor. He said he doubt anything is wrong but lets get the full work up, we went along with it, imagin my surprise when the called us at home and said the foung a problem with Cole 22 chromosne and we needed to come in and get checked...
So not only is there something wrong with our son but your saying one of or both of us could of caused this, I was soooo upset, angry confused and worried.
Again they called us at home, come to find out I was the carrier, i have a balanced translocation, his was balanced. The doctor called us in gave us a drawing of the 22Q13.3 and Trisomy 9Q34 and a print out and told us to call if we have any questions... which led me here.
Well hope to talk to you soon,
Megan
Cyndy Krietsch <tynty@...> wrote:
Cyndy Krietsch <tynty@...> wrote:
Hello Megan,
Congatulations on your little boy (Cole?). How are
you and he doing? I know it is frustrating because
ther is hardly any information out there. My daughter,
Hanna, has mosaic trisomy 9 with a balanced
translocation (9,16). We were given a very bad
prognosis and decided to induce early. Hanna was 6
weeks early and to this point has not shown any overt
physical signs of trisomy. Hanna has a minor kidney
problem and is hitting milestones around 3-4 months
late but other than that, she is a happy baby.
Have you tried www.trisomy9.org? I think it is a very
hopefull website.
I look forward to hearing from you soon. Thanks again
for writing.
Cyndy
--- Coles Mom <shyygrl411@...> wrote:
>
> Hello My Name is Megan,
> My son was diagnosed with Trisomy 9Q34 and 22Q13
> deletion.
> I am looking for other parents gowing/ or gone threw
> the same or
> similar. He is our first child and is only 7 mos
> old.
>
>
>
>
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